Camila has been in Pediatric Physical Therapy (PT) the majority of her life. She has been receiving two hours of PT a week from licensed Pediatric Doctors of Physical Therapy (DPT) for 11 months. We also complete about two to three hours of PT every day at home, to ensure the goals and skills she is working towards in therapy sessions are carried over through home programming. In addition to PT, Camila spends time in a Pediatric Stander, a supportive frame designed to help Camila stand upright. This helps improve her overall health, including bone strength, circulation, digestion and prevent joint contractures. 

 

Specific to Camila’s presentation, she has fluctuating muscle tone throughout her body. When you think about muscle tone, imagine your muscles are like a rubber band that’s always a bit stretched. They have some firmness or “tone” even when not actively used, allowing you to keep your body upright, maintain posture, and prepare for sudden movements. When someone has low muscle tone (hypotonia), their muscles might feel loose or floppy. If someone has high muscle tone (hypertonia), their muscles might feel stiff or overly tight. 

 

Camila has both hypertonia and hypotonia, presenting with variability and unpredictability. This means that different muscles or muscle groups in her body experience varying degrees of firmness at different times (fluctuating tone). Camila experiences hypertonia predominately in her legs, although this tone fluctuates in her arms, as well. Camila's experiences with hypotonia are largely from the waist up. Camila also displays significant difficulties coordinating the use of extensor and flexor muscles simultaneously. 

 

As you can imagine, this makes for an extremely complex presentation that directly impacts her gross motor development. Camila does make slow progress in PT and we celebrate every single accomplishment, affectionately calling them inchstones rather than milestones. We joke that you can tell Camila is a therapy baby because her catch phrases are “I did it!” and “Good job!” She celebrates in her own accomplishments right alongside us. 

We don’t know what her gross motor abilities will be in the months and years ahead, so we make an active choice to drop expectation, meet Camila where she is at, and help her to develop independence, confidence and self-love. Our hope for her is that no matter what setting she is in, she feels that sense of belongingness and can showcase her personality, uniqueness, and strengths.